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Friday, February 22, 2013

What a weird flu season don't you think? Every one I know has the flu, the real flu or some other sort of virus that seems positively horrible and wretched. Doctors seem to be handing out the RSV diagnosis like it's some hot commodity. I've been feeling pretty confident that we would escape the nasty bugs this season. Probably too confident.

Sam started with a sore throat this morning and a cough. Now, Sam, he is the best at living in denial when he gets sick. He could have a fever of 125 and he would still swear up and down he wasn't sick. Later this afternoon, he started asking for some Vitamin C and cough drops. When that boy asks for medicine, you now he is not feeling too well.

From out of the blue, I started feeling so sick tonight. My joints are sore, my skin is achy, that's right, achy, my head is throbbing, my eyes sting and I feel like I could sleep for the next 10 years. I'm wrapped up in about 30 layers of blankets and I'm sitting here playing mind games with myself and hoping I can bargain with God for a lesser sentence than Influenza A.

I can handle a cold, a sinus infection, even a little stomach bug sans the vomiting. I hate vomiting, there is nothing worse than vomiting. I could manage the flu if it only lasted two days, maybe three.

Another fun game I play with myself when I am feeling sick is 'Name that Virus'. If this really does turn into something big, I wonder what it will be. I've been around people who have been sick with all sorts of crazy. Even in our own home, we have been courting Cytomegalovirus. Could it be that? I've been at the hospital 3 of the 5 days this week, I could have picked up anything there!

Oh well, while I wait for whatever to wreak havoc on my life, I am popping vitamin C like there is no tomorrow. Hopefully, there is a tomorrow and hopefully it doesn't include all these bugs that seem to think they can just take up residence in my body. For now, I am refusing to go viral.

Monday, February 18, 2013

This post is about me. I think I've mentioned before that I have Ankylosing Spondylitis, a genetic arthritis that causes your joints to turn to calcified bone. I was diagnosed about 8 years ago but have been living in pain since I was a teenager.

Two years ago, I gave up going to my Rheumatologist because I couldn't afford the injections to put it into remission. Just before Christmas, I decided I better go back because I was having more days filled with pain than usual.

He confirmed that the disease is progressing and I have already lost 4" in my spine to this disease. He begged and pleaded with me to find a way to start the injections. He offered to have his nurse try to help me get a grant from the pharmaceutical company that makes Enbrel. So she did. I finally heard back from them today.

It was kind of funny at first because the girl said, "I have great news, Enbrel will enroll you in their program and you will only have to pay a $6000 co pay."

"How is that good news? I don't have $6000 to pay for anything let alone drugs." I said.

"Well, there is another program we could do but you would have to pay $925.00 a month."

"I'm sorry, I just can't do that but thanks for trying."

"Okay, hold on." She comes back a few seconds later and says, "Alright, we will cover 5 weeks of the medication at no charge but then we won't be able to help you anymore."

"Wow, from $6000 to free! That's a good deal! Thank you."

Just out of curiousity, I asked her how much the medication would be if I paid cash for it and she said, $2600 a month!! Holy smokes! I better look into the cost of a wheelchair. There's no way I can afford that! Doesn't matter though, I am so looking forward to 5 weeks of more mobility and less pain! I never thought I would be so excited to give myself a shot in the stomach every week but I can hardly wait. That will make two injections a week, one I currently give myself in my leg and this one in my stomach. Fun times right?

Thursday, February 14, 2013

I remember when I was much younger, my parents took us to Disneyland. The only thing I remember about Disneyland was being terrified the whole time we were there. I don't know who's idea it was to drag me on the Matterhorn, but there I was, screaming my guts out, crying, begging for it to stop and let me out! It was not a fond memory. I could never figure out why people would pay money to be scared to death and feel their stomach rise to the back of their throat. Why?

I wish I loved Roller coasters and other thrilling rides but I don't. I don't like those extreme feelings. I really don't like feeling at all. I think I have figured out that living with Shwachman Diamond Syndrome is pretty much like an afternoon on the Matterhorn. It can be terrifying and white knuckling at times. When the worst is over, it's still not over. You stand there, blanched, by the exit of the ride, head hanging in a garbage can wondering if you can keep it together or is this the moment when you toss your cookies! Your legs are shaking, and hands are numb and your head is spinning. Princesses and other fictitious characters wander around you and you are thinking, what the heck? It's kind of weird and disjointed, like some Disney nightmare only it's real.

I have had a little time to think about the situation with Spencer. It's not looking good, at least today's vantage point. As usual, the whole thing could turn around tomorrow or next week, even next month. I have to remember that things change quickly around here. He will have good days and bad days but to think that CMV is something he is going to have to manage for the rest of his life is a bit daunting.

I can't help but worry about Shelbie and Sam. I spend the better part of each day trying to keep them free from bacterial infections and viruses and we steer clear of sick people and I go through a lot of bleach and Lysol. Sam is currently very neutropenic with low white counts and Shelbie is dependent on Plasma to keep her healthy yet Spencer is now a walking virus. Ugh...how to keep everyone healthy, I have no clue anymore. Not when one person is a carrier. Maybe it's too late, I haven't had them tested yet.

Sigh...The doctor is hopeful that Spencer will fight this and it will go into dormancy soon and he will have a respite. I hope he's right, for Spencer's sake. If not, we may have to turn to IVIG to give him a boost. I freak out at that thought. That would make our monthly medical bill closer to $30,000 a month! Oh well, I'm sure God has a plan so as I said before....somehow, we will count this as joy! In the meantime, I will be trying to get my legs to stop shaking and pull my head out of the garbage can by the exit of the Matterhorn.

Wednesday, February 13, 2013

Spencer's been sick for quite some time. He has a constant sore throat, random fevers, extreme fatigue and he aches all over. It has been two weeks that he has pretty much slept through every single day. He sleeps at every opportunity and only wakes when he has to like, getting school work done and working.

Tests are back and he has confirmed and active Cytomegalovirus or CMV. Bleh! It's not an uncommon virus and a lot of people get it but never even know they are sick with a virus. In an immune compromised person, it never goes away. Ever. It's in the same family as Mono and Epstein Barr. It can be dormant or less intrusive but he will always carry this virus around with him. It can become really serious because his body never mounts a response to it so this virus just has free reign of his body. Sad. Stupid virus. Stupid Shwachman's.

It's unclear if this is what is causing his white count to be all out of whack or if there is something else we are missing. Oh, did I mention there is no treatment! There is nothing they can do to help him feel better. He just needs to sleep and eat. I know that is going to be impossible for him to comply because he is not the type to sit around doing nothing...though he has been crummy enough that is what has happened the last little while.

He is making so many plans for the future and CMV was not part of them.

Friday, February 8, 2013

Wow, what a week! Just another really weird week. Last night, I took a few minutes before going to bed to read from a book I have by Joel Osteen, Everyday A Friday. He talked about how everything we experience here in life really is for our good. I believe that. I also believe that some days, it's easier to see how good the bad things are and sometimes, it's not until you get a little farther down the road when you can look back and see things with a little more clarity. I don't think there is anything wrong with looking back. There is a lot to learn, it shapes us and changes us. It's good for us.

Today is a day of looking back sort of. I have been involved in some contentious things with my ex husband over the past 6 months which I haven't really talked about which sort of explains how hard the past year has been. Nothing aggravates me more than contention and to be accused of things I just can't see. Today, I make my final trip to the Attorney's to sign some papers that will put the contention and anger to bed, at least in theory.

In doing so, I can't help but look back at what I've learned. I have learned that we like to think of life in terms of winners and losers. I'm not sure what today is going to be. Depending on which side you consider, he is walking away the winner, he got what he wanted, completed what he set out to do. I gave in and even gave more than he expected though again, I'm sure he doesn't see it this way; I know he doesn't see it this way...but since he is not the author of my life....I'll continue.

I guess, if he's the winner then that makes me the loser! In a lot of ways, I am the loser. I have always considered myself a loser. This morning already, I lost my part time job. Signing these papers in just a couple of hours means I will lose another huge chunk of change and inherit some new bills. The week has been full of doctors telling me we are losing at this game of chronic illness, and among all this, I think I'm losing my mind too! (That's for another post)

But today, after my early morning meditation, I am going to count it all joy. I am going to live today with intention. I am going to have faith in the currency of Heaven and God's economy. I am going to consider myself to be a winner today. My kids and I have been happy this week! I know, that just sounds plain crazy but I can't even describe to you how hard we laughed yesterday! We laughed last night. We have laughed a lot this week. I have three beautiful and wonderful kids and I have the best job in the world; being their mom!

I have not been a perfect mom or even a happy mom all the time. My kids know my flaws, the things I failed at in marriage but they know I keep trying to be better every day and they give me the benefit of the doubt. As I walk out of that attorney's office today, I know I will probably spend a few minutes sitting in a dead end alley somewhere, my head in my hands, having a good cry but maybe it won't be because I'm a loser. I am sad for the past, I am sad for my kids, I am sad for my ex husband and I will be sad for me but there will be a deep reverence for the God I love, the Father I have in Heaven who I just know is going to take care us...and even though there are some people who never will forgive me for my flaws and mistakes, HE will and that makes me, a winner!

Wednesday, February 6, 2013

Poor Spencer, sick again! Sick with the paralyzing joint pain, body ache, sore throat, swollen lymph glands, nausea and the list goes on. This has been going on sporadically for the past 2 months! He started another round of antibiotics on Monday and again, I find he still isn't bouncing back like one does on antibiotics.

I was thrilled that he was so sick on the day we were meeting for quarterly check ups and blood draws with the Oncologist. Now he could see first hand what I have been addressing in 50 or so emails. Every lymph node in that poor kid's body is swollen and sore. It didn't take long for the doctor to suggest that Spencer has Epstein Barr virus! Duh!! It totally makes sense. I can't believe I didn't think of that sooner.

He had it 5 years ago really bad. I think he missed 6 weeks of school. I would take him to work with me and he would curl up under my desk and sleep all the day long. He also had to wear sun glasses because the light hurt his eyes. Two years ago, the immunologist told me that he doesn't have any titers to his childhood immunizations and is at high risk for becoming infected with those things. I figured since he had EBV once, he was immune to it but he doesn't mount a response to anything! We have to wait for the official word but it certainly fits.

I freaked out slightly when I saw that his white count was sky high!! Even when Spencer had bacterial Encephalitis, his white count never went above 6000 and now it's well over 10,000. Even though the count shows that his body is responding to something bad, he really isn't mounting a response at all. Those darn white cells just refuse to move and take care of business so he remains sick for what seems like forever! They call it chemotaxis.

Now, add to this fun, the fact that Sam's counts are way below normal and he is neutropenic which means he doesn't have enough white blood cells to fight infection. It has been a blessing that Sam has been home for two months instead of going to school. The doctor was relieved to hear this. There's no way his body would be able to handle all these awful viruses going around. Now, I just have to pray he doesn't get EBV from Spencer. He too has many enlarged lymph nodes but he is asymptomatic so we are not addressing it now. He continues to have problems with losing his vision which makes me feel crazy every time it happens.

Shelbie is stable or as stable as Shelbie can be. She is having a bad case of Vasculitis right now, inflammation of her veins and arteries. She is ready for her infusion and you can tell. Her blood pressure keeps dropping really low and it gets hard to breathe. IVIG helps her autonomic nervous system get back on track.

All in all, it was a good visit today and we got on top of a lot of nagging issues. At one point, the doctor said, "I think we can safely say that your kids metabolic disorders and mitochondrial problems are of more concern than their bone marrow issues."

I didn't want to hear that but sadly it's true. Everything is getting worse but it felt good to be validated today and know that it just isn't in my head! Well, onward...I just hate seeing Spencer so sick and there is seemingly nothing we can do but pray his body can begin to heal itself.

I will probably die before I ever figure all this out. Sam met with his Psychiatrist on Monday, just a usual appointment, med check etc. I was talking about the homeschooling stuff and how much I have seen Sam struggle, more than usual with his learning disabilities. When it comes to reading, comprehension and math, it's pretty hard for him to do, especially when he isn't at school to hear that lecture. I think he has gotten by with just listening and doing the best he can with what he hears.

The doctor said, "Why are you stressing about this?"
"Well, because that's what Mom's do, stress about grades and learning and stuff like that."
"Why do you keep forgetting that what is happening to your son from a physiological stand point is much more important than school work?"
"I don't know, what do you mean?"

He went on to explain that most studies done, show that kids dealing with chronic illness, high amounts of stress are way farther behind in school work than the normal healthy kid. He said sometimes even an entire year behind and rarely if ever get caught up. Their bodies are putting so much energy into keeping things functioning that the brain just can't keep up.

I've heard this a million times before from a hundred different doctors and at least that many moms with kids who have chronic problems but it's so hard to wrap my head around. They mostly seem so 'normal' to me and so I try to just treat them that way. I find it really hard to know how to treat them without making them feel different or coddling them. I don't want to coddle them and give them special treatment because they are 'sick' but at the same time, I want them to feel like they can succeed and right now, Sam is feeling anything but successful when it comes to school.

He is having to read the Oddessey and book by Russian Philosopher Ayn Rand. I told the doctor this and he about rolled out of his chair laughing...he said he didn't even read those until his final years in medical school and even then skipped over most of the stuff. Sometimes I wonder what teachers are trying to prove by having kids read such advanced stuff...hmmm.

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"For a small moment have I forsaken thee, but with great mercies will I gather thee...I hid my face from thee for a moment, but with everlasting kindness will I have mercy on thee, saith the Lord thy Redeemer...For the mountains will depart and the hills shall be removed, but my kindness shall not depart from thee, neither shall the covenant of my peace be removed, saith the Lord that hath mercy on thee.

Oh thou afflicted, tossed with tempest, and not comforted! Behold, I will lay thy stones with fair colors, and lay thy foundations with sapphires. And I will make thy windows of agates and thy gates of carbuncles, and all thy borders of pleasant stones...great shall be the peace of thy children. Thou shalt be far from oppression for thou shalt not fear, and from terror for it shall not come near thee." 3 Nephi 22:7-14